Thyroid levels still low on NDT. Shall I add T3? - Thyroid UK

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Thyroid levels still low on NDT. Shall I add T3?

agatajarmul profile image
6 Replies

Hello, I have been struggling with Hashimoto's for the last few years. Initially put on synthetic T4 and my symptoms were horrendous- depression, mood swings, exhaustion, hair loss etc. I decided to try NDT a few years ago and have been on a steady dose of 1.5 grains. Any more makes me feel anxious and overstimulated. However, my test results are not great and I still feel exhausted, gaining weight, have muscle pains and digestive issues. I have recently been diagnosed with SIBO and I'm currently working on it. I am considering adding some T3 as I believe I might not be converting. Any ideas? I eat a healthy diet, no gluten or diary.

My lab results:

TSH 0,228 (0,270-4200)

FT3 3,81 (3,10-6,80)

FT4 13,7 (12-22)

TPO 75.7 (0-34)

TG 305 (0-115)

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greygoose profile image
greygoose

Have you tried a 100% gluten-free diet? That often helps people, one way or another.

It's difficult to tell how well you convert when you're taking NDT. But, certainly your FT3 is low, and that's what's making you feel so ill. It would appear you have absorption issues. Do you take your hormone on an empty stomach, waiting at least one hour before eating and drinking? Do you take any other medication or supplements at the same time?

What were you taking before NDT? Levo? Do you have any labs from when you were on levo only?

You may have a very healthy diet, but you aren't what you eat, you're what you absorb. And, if you do have absorption problems, then your nutrients are likely to be low, and that will play havoc with everything! Have you had your vit D, vit B12, folate and ferritin tested? Those results will tell us a lot more! :)

agatajarmul profile image
agatajarmul in reply togreygoose

Hi Greygoose, thank you very much for getting back to me. I have been 100% gluten free for a while now and it didn't seem to help a lot. Guess I need to deal with SIBO and repair my gut as well. About to do Christa Orecchio's program for that, hope it helps a bit. I had all of these, apart from vitamin D, tested in March 2018 and it was: Ferritin 76.7 (13-150), Active B12 92.6 (25.10-165) and Folate 9.02 (2.91-50). Last time I checked vit D was in Jul 2017 and it was 46.7 (optimal 30-50). I have been supplementing with it ever since then. I have also had 23andme done not that long ago and, among others, I seem to have the mthfr mutation which probably is not helping either. Before NDT I was on levo and my labs were TSH 0.422 (0.27-4.2), FT3 3.69 (3.1-6.8), FT4 21.51 (12-22). I can't remember the dose but I want to say 125. Not sure if it makes any sense. It all has been an extremely frustrating journey. I don't see GPS ar NHS endocrinologists as I have never felt like they wanted to help much. I have been through a few nutritionists and other private specialists (quite well known and ridiculously expensive) but my problems have never been sorted really. One of the specialists has suggested testing for viral infections as I have had mono in the past and some of them came back positive.I take a few handfuls of supplements a day, constantly get blood work done and I can't seem to be able to figure out the problem :(

jamesal0 profile image
jamesal0

I don't under stand your blood test numbers, every country has their own standards and really for NDT they arn't that important. Your symptoms say under replaced, I understand you get anxious and overstimulated when lift above 1.5 grains. But with NDT it's like steps you have to lift and feel a little uncomfortable, your body repairs with the extra thyroid and you can you lift again. I would add an extra grain in per day for a few weeks and see if all the bad stuff doesn't settle down. So long as you heart isnt jumping out of your chest, your'e not over doing it. Take one grain in the morning, one for lunch and 1/2 for bed time. Don't worry about the not eating with NDT, food is good, it helps dampen the T3 blast and you eventually absorb it somewhere in your 20 something feet of intestine anyway. NDT gives me a headache for an hour after taking each grain - but a double shot coffee fixes it. And completely agree with greygoose must be 100% gluten free.

best of luck

agatajarmul profile image
agatajarmul in reply tojamesal0

Thank you for getting back to me. I might try to stick with the higher dose and see how it goes.

SilverAvocado profile image
SilverAvocado

I'd say you're very undernedicated. Conversion problem doesn't really come into it at this stage, because both freeT3 and freeT4 are at rock bottom. You can only really worry about conversion once freeT4 is getting to a decent level and freeT3 isn't catching up with it.

I think the simple answer is that you need to raise. But if you're getting speeded up feelings when you do, you've got to go upstream and get everything there sorted out.

This means all the vitamins, ferritin, folate, B12 and Vit D to start with, but you may want to start looking into slightly more obscure ones as you've had such pronounced issues.

The other thing is to look into adrenal issues. Your problem of not being able to even though bloods show you are very undernedicated is quite common. I've just been reading a book that argue this is always because of low cortisol. It even says many people in this position will have Addison's and need the more extreme treatments. On the forum we see that quite rarely, but it's worth making sure your doctor has tested you.

Beyond that, you will have to self medicate, as adrenal fatigue is not accepted on the NHS (or maybe you're not in the UK and may have more luck?). The first step there is to get a 24hr saliva cortisol test, and see where you are.

In terms of trying to raise while you follow up those things, the only thing you can do is go super slow. Find the smallest size of tablet you can (maybe a quarter grain?), and see if you can manage that. I expect you've already tried that, so get a razor blade or even pill crusher and get the tiniest piece you can reliably measure and add that to your daily dose. Hold for several weeks, and then try to add another tiny amount. I've heard it suggested you might need to wait as long as 12 weeks before being able to raise again.

It's trial and error. Every time you have a reaction, drop back for several days until it's calmed down, and start again even slower. These tablets can even be dissolved in a measured amount of distilled water and dosed with an eyedropper or syringe.

If you can raise your thyroid levels, that will make it easier on your adrenals and easier to absorb vitamins, too. These things all supprt each other, so once you get the ball rolling in one, the others will all be a little easier.

agatajarmul profile image
agatajarmul

Hi SilverAvocado, I have been thinking about the saliva test. I had it done years ago and, as far as I remember, there were some issues. It is a good advice to check it again as I know thyroid and adrenals go hand in hand. I am in the UK and I know that NHS is not very helpful when it comes to those 'imaginary' problems ;) I have been taking Ashwaganda as support but I don't think it has helped much. I will also give tiny doses a try as it might be a little easier to tolerate. Thank you so much for your help.

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